For those with Trisomy 18 diagnosis

Unfortunately I have personal experience with having had a baby with T18. Not saying I'm an expert on it at all, just wanted to throw it out there in case you feel alone or have questions. And I'm praying for you.

Unfortunately I have personal experience with having had a baby with T18. Not saying I'm an expert on it at all, just wanted to throw it out there in case you feel alone or have questions. And I'm praying for you.

The waiting for that final diagnosis is the longest time, it feels like. Our u/s's showed markers and the amnio confirmed it. It is so hard not to worry, and it feels like a sucker punch to the gut. Please let me know what you find out. And don't hesitate to ask me questions. It doesn't hurt, it is healing for me to talk about him.

The waiting for that final diagnosis is the longest time, it feels like. Our u/s's showed markers and the amnio confirmed it. It is so hard not to worry, and it feels like a sucker punch to the gut. Please let me know what you find out. And don't hesitate to ask me questions. It doesn't hurt, it is healing for me to talk about him.

My son's markers included a club foot, cysts on his brain, a cleft lip (and palate which was found after his birth), and he was missing the radius in both of his forearms. The remaining bones were short. His hands were clenched. Also after he was born we found he only had four toes on his foot that wasn't clubbed and he had no thumbs.

My son's markers included a club foot, cysts on his brain, a cleft lip (and palate which was found after his birth), and he was missing the radius in both of his forearms. The remaining bones were short. His hands were clenched. Also after he was born we found he only had four toes on his foot that wasn't clubbed and he had no thumbs.

Also, I did my research on T18 and found that 50% of these babies that go to term are stillborn. The hospital put a care team together for us and during one of our conferences they agreed to induce at 37 wks. He only weighed 4lbs 11ozs and was 17 inches long.

Also, I did my research on T18 and found that 50% of these babies that go to term are stillborn. The hospital put a care team together for us and during one of our conferences they agreed to induce at 37 wks. He only weighed 4lbs 11ozs and was 17 inches long.

It's so scary guys. I'm glad to have people here that are going thru or have went thru what I am. Or have went to the end one way or another. And for those of you that ave my heart bleeds for you and your little ones. Strong ladies. I'm falling apart and I don't have any real answers yet

It's so scary guys. I'm glad to have people here that are going thru or have went thru what I am. Or have went to the end one way or another. And for those of you that ave my heart bleeds for you and your little ones. Strong ladies. I'm falling apart and I don't have any real answers yet

It was the hardest thing I have ever lived thru, and also one of the greatest joys of my life in having had him for even a short time. I am 2 yrs out, I have met many ppl, and I volunteer at a local hospital as one of 12 "Caring Companions"....mothers who have suffered a loss of some sort. We help parents who are going through similar situations as we did, make mementoes of their babies, keepsakes, etc. Of the 12 of us, I am the only one whose baby was able to go home.

It was the hardest thing I have ever lived thru, and also one of the greatest joys of my life in having had him for even a short time. I am 2 yrs out, I have met many ppl, and I volunteer at a local hospital as one of 12 "Caring Companions"....mothers who have suffered a loss of some sort. We help parents who are going through similar situations as we did, make mementoes of their babies, keepsakes, etc. Of the 12 of us, I am the only one whose baby was able to go home.

I've been grieving the death of my trisomy 18 baby girl for 2 weeks . She was stillborn at 25 weeks . She had a bilateral cleft lip and palete and major heart defects . I was so nervous about seeing her but an so happy I did . She was still so beautiful . I knew nothing about trisomy 18 before we got the diagnoses . ItS so heartbreaking to see how many have gone through this terrible diagnoses . I find it so hard not to think "why me". But then I think , when you see " 1 in 2500" and such . Somebody had to be the 1 in 2500 ... And I'm glad I'm able to be the one so the next person doesn't have to be . We plan on Ttc as soon as we are able to. And as much as I hate hearing " at least you can get pregnant" , its true , we will have another chance and for that I feel blessed.

I've been grieving the death of my trisomy 18 baby girl for 2 weeks . She was stillborn at 25 weeks . She had a bilateral cleft lip and palete and major heart defects . I was so nervous about seeing her but an so happy I did . She was still so beautiful . I knew nothing about trisomy 18 before we got the diagnoses . ItS so heartbreaking to see how many have gone through this terrible diagnoses . I find it so hard not to think "why me". But then I think , when you see " 1 in 2500" and such . Somebody had to be the 1 in 2500 ... And I'm glad I'm able to be the one so the next person doesn't have to be . We plan on Ttc as soon as we are able to. And as much as I hate hearing " at least you can get pregnant" , its true , we will have another chance and for that I feel blessed.

(((meeshymooo))) Saying prayers for you. I'm so sorry for the loss of your beautiful baby girl. I've found that people just have no clue what to say about infant loss so they say things that they think would make us feel better. I was so blessed to be Luke's mommy for however short of time. And I know that. But when ppl say "he's in a better place," I know that too but it makes me feel like asking if they'd like to trade children so their child could "be in a better place."

(((meeshymooo))) Saying prayers for you. I'm so sorry for the loss of your beautiful baby girl. I've found that people just have no clue what to say about infant loss so they say things that they think would make us feel better. I was so blessed to be Luke's mommy for however short of time. And I know that. But when ppl say "he's in a better place," I know that too but it makes me feel like asking if they'd like to trade children so their child could "be in a better place."

(((Gotallboys))) Thank you, everything you say is so true. My sister is pregnant , I asked her to buy some of my baby stuff off of me ... She declined .. Saying she didn't wanna "jinx" her baby . Wow. I mostly hate seeing people complain about there perfect babies or ones that don't even want there perfect baby's .... It's amazing how things change hey? I was concerned about if my baby was gonna have THICK hair like my husbands or my pathetic fine hair up in till I found out she had much bigger problems .... Wow how things and perspectives change . Now all I hope is that my next baby has a heart that can beat on its own .

(((Gotallboys))) Thank you, everything you say is so true. My sister is pregnant , I asked her to buy some of my baby stuff off of me ... She declined .. Saying she didn't wanna "jinx" her baby . Wow. I mostly hate seeing people complain about there perfect babies or ones that don't even want there perfect baby's .... It's amazing how things change hey? I was concerned about if my baby was gonna have THICK hair like my husbands or my pathetic fine hair up in till I found out she had much bigger problems .... Wow how things and perspectives change . Now all I hope is that my next baby has a heart that can beat on its own .

I'm so glad you posted this thread. I lost my baby girl to t18 shortly after she was born and I can remember feeling so alone after the diagnosis. So many unknowns and what ifs and no one really knows what to say. I echo your sentiments. If anyone has questions or concerns feel free to shout them out. I did lots of research and we had lots to plan and think about. I had extensive meetings with the medical staff and talked a lot to my brother in law who is a pediatrician. We spent a lot of time on our birth plan. I'm happy to share that info with whomever may need it, can also give some good pointers on what to bring to the hospital to make a memory box if interested. We are all in this together and if we can help another, our baby's purposes are fulfilled over and over again. Love and prayers to you all who may be at the beginning of your journey!

I'm so glad you posted this thread. I lost my baby girl to t18 shortly after she was born and I can remember feeling so alone after the diagnosis. So many unknowns and what ifs and no one really knows what to say. I echo your sentiments. If anyone has questions or concerns feel free to shout them out. I did lots of research and we had lots to plan and think about. I had extensive meetings with the medical staff and talked a lot to my brother in law who is a pediatrician. We spent a lot of time on our birth plan. I'm happy to share that info with whomever may need it, can also give some good pointers on what to bring to the hospital to make a memory box if interested. We are all in this together and if we can help another, our baby's purposes are fulfilled over and over again. Love and prayers to you all who may be at the beginning of your journey!

The doctor found 3 cysts in my babies brain when I was 17 weeks. He said this was a marker for trisomy 18. My next ultrasound is on wed (I'm 32 weeks now). Has anyone had a baby with only cpc's and tri18? I'm very nervous.

The doctor found 3 cysts in my babies brain when I was 17 weeks. He said this was a marker for trisomy 18. My next ultrasound is on wed (I'm 32 weeks now). Has anyone had a baby with only cpc's and tri18? I'm very nervous.

Hi I'm 26 weeks pregnant with my little girl Julia Grace. She has been diagnosed with Trisomy 18 through an amnio. She has bilateral clenched fists and a severe heart defect. I am hoping and praying that she makes it to term and is born alive. Next month we meet with the neonatologist and medical director at the hospital where I will be delivering. We need to have a tentative birth plan done by then. I would appreciate any of your birth plans/ideas that you used. My name is Kristina and my email is kbrinkman723@yahoo.com. Thank you so much for posting this. I do feel all alone sometimes. I know God has a plan for her life and I am putting my trust in Him but some days I just feel so sad and scared as to what the outcome may be.

Hi I'm 26 weeks pregnant with my little girl Julia Grace. She has been diagnosed with Trisomy 18 through an amnio. She has bilateral clenched fists and a severe heart defect. I am hoping and praying that she makes it to term and is born alive. Next month we meet with the neonatologist and medical director at the hospital where I will be delivering. We need to have a tentative birth plan done by then. I would appreciate any of your birth plans/ideas that you used. My name is Kristina and my email is kbrinkman723@yahoo.com. Thank you so much for posting this. I do feel all alone sometimes. I know God has a plan for her life and I am putting my trust in Him but some days I just feel so sad and scared as to what the outcome may be.

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